EASTER SEALS MIDWEST

Thursday, June 20, 2013

An Open Letter to The Ignorant

I had a long car ride from Indianapolis to North Carolina yesterday and to pass the time I read up on the news. There was this one articleautism and Asperger's Syndrome and I made the mistake of reading the comments. I think anyone knows that the comments area on anything news related is a hotbed of ignorance (not all the time) and on this I read comment after comment of pure ignorance and downright rudeness towards any and all on the autism spectrum. One comment read, "I'm so sick of hearing about autism and 1 in 88. It's all a fraud and just spoiled children." There were several more that were worse than that but as yesterday went on, and I flagged a race in Concord, NC, I became moved to write what I'm about to write which is an open letter to the ignorant...
Dear Ignorant,

I know you probably have a great time writing your comments on the internet. Perhaps you like just pushing buttons, or perhaps you truly believe what you write, but as a person on the autism spectrum I want to say your words hurt. No, your words don't just hurt as that doesn't put into scope just what your words means. Your words, as seemingly irrelevant as they are, are a complete slap in the face of everything that I am and is a ceiling to the potential I could reach and a complete mockery of the challenges I face.

Do you think it is a fraud? Honestly? I do my best at writing but I wish I could write in a way that would truly put you in my shoes. Can you imagine what it is like to hear everything and to be hyper-vigilant at all hours? Can you imagine what it is like to look at everyone else and wonder what normal feels like? To live life with a hint of envy carries with it a 50 pound sack of sadness on my shoulders. But you know what? Each day, somehow, I get up and I take on the world.

While I may, somehow, gather the courage to leave my front door and put myself on the line and risk social ridicule and social disasters, autism affects many more than just the person. When you were writing words did you, for just one second, think about the parents, brothers, sisters, and all extended family of those on the spectrum. What you so casually called a "fraud and a bunch of spoiled children" are living, breathing people that have no choice in who they are. We are what we are and by slapping us with your words you minimize who we are and the challenges we face.

A lot of us on the autism spectrum try in life and fail. This could be with friends, a job, or living independently, but we try. The moments we fail are a hazardous time because it is very easy for us to give up. Sure, oh ignorant one, you can call us weak, spoiled, or say we have a choice, but to us, should we fail one time, the end result will always be failure so we ask ourselves, "Why even try?" On top of that, when we read words like yours, we may just come to believe there is no hope because, with words as so bluntly put as yours, we are weak, defective, and a nuisance to the world.

I mentioned I wished I could write in a way that truly would let you, the ignorant, in on my life, feelings, and challenges. What is easy for others may be difficult for us. What comes naturally to you may not come so to us. So yes, I wish I could do one better actually; I wish I could let you in on my life for just one day. I wish you could experience a day in my life and the constant worry about my posture, my words, and my actions. I wish you could experience what it is like to fear each social encounter and the damages that may come from it. I wish you could experience what it is like to constantly think to the worst case scenario. I, above all else, wish you could experience the amount of negative self-talk my brain does because of all the other points I mentioned. It is a miracle I get through each day and I wish you could experience that. On second thought that might be too cruel because, through your ignorance, I see weakness and there are no words that can ever be written to give you a glimpse at the strength it takes to get through the day and the experience, for you the ignorant, would be beyond your comprehension. But hey, in your eyes it's just a myth, right? Just a bunch of spoiled children, right? I usually don't write in a condescending manner and I hope that autism ignorance becomes extinct, but the strength of us on the spectrum to tolerate our challenges, and of those by our parents to help guide us and support us when we need it is truly extraordinary. As I said, I don't think you'd last a day in my shoes so please, next time you feel the need to express your anger at hearing about "1 in 88" I hope you realize that us "ones in eighty-eight" have things a bit different and to deny us our right at that is to, in a way, extinguish part of our soul. If a person is okay with doing that then I have to be fully honest and say I'd hate for them to spend an hour in my world because truly, honestly, they would be no match for this "myth" known as the autism spectrum.

6 comments:

What a double-edged sword we unsheathed when we gave everyone a forum for their opinions. People who would never have the courage to say these things to someone's face have found a way to spew forth every idiotic, ignorant and downright prejudiced thought their small minds can come up with. I've actually foregone Facebook and community chat rooms because, while I can respect someone else's opinions and thoughts, I don't have to subject myself daily to them. Frankly, the ONLY reason I have been toeing the waters of Facebook again was to be in contact with you. And, even then, I prefer to get your thoughts and opinions through this blog rather than get caught up in that quagmire again. It truly isn't worth it.

As far as the comments section of news articles go, I can't even begin to agree with you as much as I want to! Trolls are like the speed bumps of the Internet. (Sorry for all the similies and comparisons, it's the way I tend to talk) You can just be cruising along reading about something that interests you when, all of a sudden, POW, an Internet troll jumps out and starts calling you names. Maybe not even directly to you, but like this particular person did, pointing you out by making a sweeping generalization of those like you. You have to have a thick skin to venture into the Internet these days. All I can say is, try not to let people like that get to you too much. Like I've said before, words certainly CAN hurt, and they leave scars that many can't see. Your response was well worded and, unfortunately will probably never be seen by those who need to see it. I hope you copied this into that comments section to answer the ignorant. Well done, sir. Well done.

Aaron I could not agree with you more that there are alot of ignorant people out there but that goes beyond ignorant because if the guy read then he is informed. Instead the guy is just plain cruel and has no clue what its like for those on the spectrum. We have a 13 yr old son that has PDD-NOS and gets help from the same place you work but he is doing pretty good we are fortunate he is highly functioning but when people look at him they think he is normal. However they do not deal with the emotional toll this takes on him daily we see that and deal with it and its a daily learning experience for us and other parents. Thank you for making note of it in your letter. Hope to see you speak some day soon.Michelle

Michelle, you've probably seen me, I'm at the front desk. I think one of the biggest hurdles that those on the spectrum have to deal with is the fact that they tend to not display any particular physical characteristics that tell others that there is something different about this individual. Although, technically speaking, what two people are exactly the same? I've heard people talk about those on the spectrum and they almost always say it's a behavior issue that can usually be correct by physical abuse. I've heard people say that all that kid needs is a swift kick in the butt or a slap across the face. That's all they got and "look how well I turned out." I LOVE that phrase because it's so obvious to everyone else around them that they are anything but "normal" and "well adjusted." The good thing is, they tend to out themselves fairly quickly and you can dismiss them as ignorant simpletons and get on with your lives.

P.S.I'm glad your son is doing well here. I've only been around for a couple of months but I've gotten to know and love all the kiddos who come to us.

We get the help through hannibal regional and such we are down in Lincoln county so they tend to come to us we went for awhile without much service but last year was a rough one so this year we will have more services I am sure. He is doing great and adjusting to Jr high but having issues with organization anyone got any suggestions we will take all we can get lol.Aaron your doing a wonderful service to the community thank you.... Derrick I look forward to meeting you sometime.

Aaron, I won't comment further as you and Derrick have it covered. I would like to remind you that this type of ignorance and misinformation make what you do that much more important. For every close-minded person out there I have to believe that there are many more that are open to learning and understanding.

Your blog did get me thinking...I don't know if it is possible...could you essentially walk around with a tape recorder for a day and verbalize what you are feeling and thinking? I would give anything to better understand the world as you experience it.

Who I Am

Hello, my name is Aaron Likens and thanks for visiting my blog. I am the Autism Ambassador for Easter Seals Midwest and also the author of the book "Finding Kansas. My passion in life is to raise the awareness and understanding of the autism spectrum through this blog as well as the many presentations I give. For myself, as much as it is a passion, it is personal because I was given the diagnosis of Asperger's when I was 20. Back then there wasn't much info and I fell into a pit of despair. I stayed there for 15 months but then I eventually discovered myself through writing and now here I am and here you are on my blog. There are well over 1,000 posts on this blog as I started blogging in March of 2010. So whether you're reading today's blog, or are skimming through stories of the past, I hope that your time here gives you a better glimps of what living life on the autism spectrum, or, "other side of the wall" is like. If you do like what you see please follow me on Facebook as that's where I share when I've written a new blog as well as announcing where I will be presenting. Please note that the opinions expressed on this blog are mine and may not be reflective of Easter Seals Midwest.

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Finding Kansas Revisited

To mark 10 years since I started writing my book I did a blog series with my thoughts from today on what I wrote then. This was the first time I ever read anything I had ever written.

The Sunglasses Experiment

I ran a sunglasses experiment to judge why eye contact is so difficult. I wore them for about 15 days, then I switched back to my normal glasses to see how big of a difference there was. By clicking my picture you can be taken to the page that has the complete experiement all in one place.

About Me

I am the Autism Ambassador for Easter Seals Midwest and also the author of Finding Kansas: Living and Decoding Asperger's Syndrome. My passion in life is raising awareness of Autism Spectrum Disorders and to help the world understand how the mind of a person on the spectrum works. I can do this because I am on the spectrum (Asperger's).
I was diagnosed at the age of 20 and after the diagnosis a lot of my quirks made sense. I didn't understand who I was though and went into a deep depression. Through this depression though I became very keen on my inner self and I started to write. I wrote and I wrote and before I knew it I wrote a book.
5 years later I am, among other things, giving presentations to police, teachers, and parents and am now starting my quest on making the best blog possible!
The views on this blog are mine and may not be reflective of Easter Seals Midwest.
If you have any questions, or comments, or have an article idea please email me at aaron.likens@yahoo.com.